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At two years old, I was diagnosed with cerebral palsy. My diagnosis is a tribute to the power of my mother’s voice. She went from doctor to specialist to support group, but no one believed her when she pointed to the signs of disability I was presenting. And after my diagnosis, she spent hours arguing with insurance companies about whether or not my life with a pre-existing condition had enough value in which to invest one more procedure or physical therapy session. While I was insured through my father’s employer, many of the procedures that are now acceptable courses of treatment were, in the 1990s, categorized as “experimental,” which meant insurers were legally not required to cover them. Throughout my childhood, my mother advocated for my needs, but as I grew older, my mother raised me to speak up for myself. “Nothing about us without us” is not just a rallying cry for disabled advocates—it’s a message to those fighting for disability rights to do so with us and not for us.
For disabled people, someone ignoring our presence is all too familiar (growing up, acquaintances asked my mother questions about me like I wasn’t even there), which makes the current discourse surrounding the right to healthcare all the more frustrating for disability advocates like myself. Conversations surrounding pre-existing conditions often erase the voices of disabled people while promoting the voices of disability-adjacent speakers such as parents and aid workers. This is difficult to grapple with. How can we celebrate the presence of these voices in our advocacy when they are inherently deemed more valuable than us simply because they’re able bodied? Having a disability is difficult, but often the most disabling aspects of my life are the institutions, people, and perceptions that try to keep me hidden. Speaking about disability is much like speaking on systemic racism: fine as long as the speaker can make the listener feel good about how they “rose above.” As Gregg Beratan, one of the cofounders of #CriptheVote, a disability advocacy social movement, said, “Many now seem to share our fears of what [Republicans] are doing with the ACHA, unfortunately, mainstream media don’t tend to want to tell our stories unless they can twist them into some sort of inspiration porn.”
We don’t yet know exactly what the GOP’s dismantling of the Affordable Care Act will look like, but disability advocates raised the alarm well before it was time to make our way to the ballot. #CripTheVote founders Beratan, Alice Wong, and Andrew Pulrang organized digital town halls and cultivated an online community of self-advocates speaking on policy issues before the 2016 election. Among the many issues discussed was the impact changes to the Affordable Care Act could have on disabled people. While Crip the Vote is a nonpartisan political movement, it was clear from the presidential candidates’ platforms that the GOP’s vision for healthcare posed the greatest threat to those with pre-existing conditions. “This is a really bad climate for disabled folks,” says Anita Cameron, a disability advocate who protested with #AdaptandResist in front of the White House in May. Over eighty disabled people were arrested and issued citations as part of the protest. “I will be affected because I am applying for the Medicaid Buy-In since I work. If [the AHCA] or anything like it passes, I won’t get on Medicaid and so many of us will die or be institutionalized.”
The fear for many disabled people is that the proposed healthcare law, the American Health Care Act (AHCA), will essentialize the treatment of disabled patients as resources become scarce and systems become overwhelmed. There are already many cases in which disabled people enter a hospital for care or short-term aid and never return home, as hospitals and social workers make decisions with little input from the patient. Often, disabled people are placed into nursing homes against their wishes due to lack of funds for at-home care.
Each day that this bill draws closer to being passed by the Senate, it brings us nearer to the problems disabled people are facing in the United Kingdom under cuts to their social services, including starving disabled people and worsening suicide rates as programs are cut. As the conservative government made cuts to disability living allowances, more disabled people were deemed able to work who would not have been in previous years. Peter Sherwood, a disabled man in Suffolk, England, lit himself on fire after a Personal Independence Payment assessment left him feeling as though his necessary living allowance would be cut, and a study conducted by Oxford University found that the U.K.’s stricter “fit-to-work” guidelines led to nearly 600 suicide deaths between 2010 and 2013.
In line with conservative populism, many politicians see disability as a personal problem to be overcome only by those with diagnoses. In line with the individual model of disability, their policies often strip disabled people of any social protections under the concept that they’re “special treatment.” So often, when individuals with disabilities are deemed “fit to work,” politicians see their policies as helping disabled people help themselves—frequently neglecting the social model of disability that recognizes institutional ableism and discriminatory policies as the most disabling forces in the life of a person with a disability.
The writing’s on the wall for America’s disabled population. Before the Affordable Care Act, people with pre-existing conditions and disabilities could be denied health coverage, and the American Health Care Act heralds back to those times. While not specifically denying coverage, the bill allows insurers to essentially deny healthcare as it allows insurance companies to raise premiums and price over 6 million people out of coverage. With disabled Americans earning as much as 37 percent less than their able-bodied peers, and with laws in some states allowing employers to pay disabled employees below the minimum wage, this is not difficult to do.
Because comorbidities (the occurrence of two or more chronic diseases or conditions in a patient) are common, many disabled people will be forced to choose which diagnosis they can afford to treat. I cut down on psychology appointments because my co-pays became difficult to manage with a monthly insurance payment of $500 that my two part-time jobs could not entirely cover. If it were not for the help of my family, it’s possible I would have been stripped of my independence and forced into an institution, back to arguing with insurance companies about the value of my life with a pre-existing condition.
Should those with pre-existing conditions fail to find insurance through an employer, they would be entered into an old nightmare that had been removed by the Affordable Care Act: high-risk pools. That outcome is entirely possible, and likely to happen, considering that, in 2015, just 17.5 percent of disabled people in the United States were employed. High-risk pools are touted as the best way for costs to be lowered for healthy people, but they are a crapshoot at best. They take months if not years to register for, during which time the most vulnerable remain uninsured. Once people are registered, the pools are exorbitant both to members and the governments that fund them.
The AHCA also effectively penalizes women for seeking medical care after sexual assault, so the care and diagnoses associated with sexual assault conditions could bar women from healthcare. Rape, Abuse & Incest National Network (RAINN) has found that disabled people are the most at risk of sexual assault, which would mean that disabled people would be penalized at a disproportionate rate for seeking care after trauma. The proposed healthcare bill also makes large cuts to Medicaid, which will impact special education programs in public schools across the country. This is on-brand for the GOP, since Betsy Devos’s desire for school privatization promotes discrimination in admitting disabled students. These cuts to special ed also, ironically, jeopardize school gifted programs, as much of the funding is billed as special education and covered under Individualized Education Programs. In my private circles, I may often joke that I simultaneously split my time in special education for my physical endeavors and gifted programs for my intellectual aptitude, but I would hate to see those opportunities slashed for disabled children.
In the current political climate, it is necessary to hold the line on battles and rights we’ve already been afforded, but we must also develop advocacy that uplifts the many unique voices within the disabled community. Disability rights must be intersectional. We must boost the voices of disabled people of color, religious minorities, trans disabled people, the queer crip (quip) community, and disabled women, and listen to their experiences in the current healthcare system as well as their ideas for improvement. Likewise, other marginalized communities must better integrate disabled voices in their platforms. As the disabled proverb goes: Disability is just a day away.
When I was 16 years old, my mother handed me a manila folder with dozens upon dozens of crinkled and dog-eared pages scrawled with her handwriting: my inheritance. She had kept everything from official documentation with my diagnosis at two years old to transcripts of conversations with insurers she had written. It was now my turn. Initially I was overwhelmed with the idea of keeping myself alive in the face of such opposition. I had seen what my mother had gone through. But I soon came to realize that needing help does not make us helpless and advocating for disability rights does not make anyone our heroes.
The best way to gauge whether or not your advocacy is inclusive is the participation, and not just presence of, disabled advocates in the planning process. Look for the involvement of organizations that promote the self-advocacy of disabled citizens, such as National ADAPT, The Autism Self Advocacy Network, The DisVisibility Project, and the Harriet Tubman Collective. Keeping in mind that disabled people do things differently, take a deep dive into online spaces such as these to learn about disabled advocacy, as many of us find marching and in-person protests inaccessible financially, physically, and emotionally. Engage without able-splaining our medical needs to us. Advocate alongside us, not for us. If your advocacy does not include us, we don’t want it. Remember: Nothing about us without us.